Development and evaluation of CARIES-QC: a caries-specific measure of quality of life for children

BACKGROUND: Existing paediatric oral health-related quality of life (OHRQoL) measures are generic instruments designed to evaluate a range of oral conditions. It has been found that disease-specific measures may be more adept at detecting subtle changes which occur following treatment of the condition in question. Furthermore, existing self-report OHRQoL measures have not involved children at all stages of development of the measure. The aim of this study was to develop a caries-specific measure of quality of life for children. METHODS: The first stage of the study involved a qualitative enquiry with children, aged 5–16 years, to inform the development of the measure. Children generated the potential items, contributed to item reduction and questionnaire design and participated in the testing of face and content validity. The resulting measure was evaluated in a cross-sectional validation study. Ethical approval was granted for the study. RESULTS: The qualitative study found that children discussed a number of caries-related impacts which affected their daily lives. These were incorporated into a draft measure which was further refined following testing of face and content validity. This resulted in the production of the Caries Impacts and Experiences Questionnaire for Children (CARIES-QC), comprising 16 items and one global question. Two hundred participants with a mean (range) age of 8.1 (5–16) years took part in the further evaluation of CARIES-QC. Four items, which did not fit the Rasch model, were removed from further analysis. The remaining 12 items demonstrated good internal consistency (alpha = 0.9) and the total score showed significant correlations with the number of decayed teeth, presence of pain, pulpal involvement, the Child Perceptions Questionnaire (16-item short form) and the global score (p < 0.01, Spearman’s rho). CONCLUSION: In conclusion, children’s input allowed the development of a valid and reliable child-centred caries-specific quality of life measure. CARIES-QC can now be used to evaluate which interventions for dental caries are most effective in reducing impacts from the child’s perspective. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12903-018-0662-8) contains supplementary material, which is available to authorized users.